docmartenmom

Multiple Diagnosis - Autoimmune Nightmare

24 posts in this topic

Hi Amanda, Lolly, Jo, Queenie and Snowbird ~

 

I am glad to know I am not alone but sad at the same time knowing there are others out there dealing with this condition. I did go to my gastroenterologist for an upper endoscopy, but I do not believe the test you had mentioned was done - he did find atrophic gastritis, penicious anemia, no intrinsic factor, Barrett's Esophagus, intestinal metaplasia in my esophagus and stomach. I am a mess internally just based on that one test alone :lol:. Should I go back to him for the esophageal mobility test or is that something the scleroderma specialist can do herself when I see her? So many questions and hopefully so much time :-)

Thanks ~ Lori

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Hi everyone,

 

I am new here too and have already in the short time that I have been here feeling much better about things. Having someone to 'talk' to who understands helps a lot, so keep posting Lori.

 

I had no idea I had anything wrong other than the Lichen Sclerosis I was diagnosed with as all my symptoms my General Practioner kept saying were the results of old age and being over weight. The over weight part seems to be doctors answer to all ailments! I went to a Rheumotologist for pains in my joints which I assumed was arthritis, she started asking me questions about other symptoms and turns out it wasn't old age and fat, I had Limited Systemic Sclerosis and a host of other things <_< I just found out about my condition and am still learning so I am afraid I can't offer much advise other then to wish you all the best and hopefull getting to see a Sclero specialist will put you on the right track to getting what you need to help.

 

Jean

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Hi Loki and Jean,

 

Loki, I am so sorry to hear your mom passed from this - my heart breaks for you (((hugs)))

 

Jean, what an insensitive doctor to call you that!!! Ugh. What was the length of time from when you started feeling ill until you were diagnosed?

 

Lori

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Hi Lori,

 

Well I know now that I had the symptoms for 5 years before the diagnosis. But at the time I was told that they were nothing to worry about, my fingers were no problem and just don't let them get cold, my fingers cracking and bleeding all the time I was told was dry skin, the bruises on my legs were caused by me bumping into things and not remembering them. The horrible pains I get in my abdomin were causes because I was overwieght so when I bend over and stand back up that it caused me to pull or tear muscles. When I said it happens even when Im not doing anything, I was told well when you are overwieght that can happen.

 

I get weight attributed to a lot of things, and I understand that it is a problem, but the worst I had was my Dermatologist kept going on and on about my weight when I was being treated for the Lichen Sclerosis that she would not do anything to help with the pain and problems I was having. I finally said ok if I lose all the wieght you think I need to does that mean that all my symptoms will go away? As big incentive it is going to take away all the pain I have on a daily basis, and she said no but you will be healthier, but it won't do anything to lesson your condition. So I asked for a new Dermotologist :rolleyes:

 

I have been working on losing weight, I have lost 42lbs so far and in English that is 3.2 stone. It is incredibly difficult with the pain in my stomach muscles and legs but I am working on it, doing what I can when I can and eating right. I find the hardest part is to eat at all, I just don't feel like eating most of the time or can't be bothered to make anything. And you would think I would be dropping weight like nobodies business but my body holds on to every ounce of fight like grimm death :angry:

 

I am hoping now that I got a diagnosis and they are starting me on some medication things will improve, crossing my fingers and hoping for the best!

 

:emoticon-hug:

 

Cheers Jean

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Hi Lori, welcome!! :flowers:

 

I'm really glad you've joined us. The whole autoimmune nightmare is so confusing. It takes time to wade through everything. Frankly it's taken me years. I have Scleroderma, Lupus, Hypothyroidism, and Sjogrens. They throw out the Fibromyalgia and chronic fatigue too, but I've refused to grab those ones yet. I do hope that when you see a specialist you will get a few answers. My first symptoms (and my continued biggest ones) were pain and fatigue. I went through numerous test by regular doctors and then one day, someone hit the jackpot. Keep us posted, we really want to keep up with you.

 

Hang in there!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Thanks Pamela (((hugs))) I go to the specialist Monday afternoon and I will post her input ~ I feel some relief knowing I am going to a scleroderma specialist in NYC - I hope you are well & enjoying your weekend! Lori

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